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Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

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Lisa Salberg Find out more about Lisa Salberg
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  • Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

    Hello from the HCMA,

    The HCMA has been contacted by a market research firm currently doing work for one of the major cardiac device companies in the USA. They are seeking participants for a study of patients using home monitoring for cardiac devices including ICD's and Bi-V pacemakers / ICD's. They will be conducting sessions in both the Chicago and Los Angeles areas in their office or in your home, interviews may be video taped. All interviews are private to be held with the moderators and patients, you may bring a caregiver or significant other (no additional fees will be paid to caregivers). They will pay participant $150.00 for their time, the survey is estimated to take 1-2 hours.
    If you are interested in learning more about this survey oppurtunity and how your input can help to shape the future of the device industry please complete this survey.

    The HCMA is happy to offer this opportunity as it is our chance to help build better systems for our collective futures! If you are in the regions they are looking for and have used home monitoring please take some time to fill out the survey and learn more.

    All information will be kept confidential from the device manufacture. By completing this survey you understand that the information you supply will be shared with an outside firm for the purpose of completing this study.

    Additionally the survey firm will make a donation to the HCMA for each participant they interview as a direct result of this survey. The HCMA will recieve $100.00 per participant.

    The survey URL is http://vovici.com/wsb.dll/s/ca61g2b8bb

    Thank you,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

  • #2
    Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

    So far we have 34 people who have responded to the survey and your information has been shared with the research firm. You will each be contaced and informed if you qualify for their study.

    Thank you all for taking to time to participate in this survey and help us all by giving of your time to help improve the lives of those living with implantable cardiac devices!

    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

      UPDATE!!

      BOSTON has just been added to the area to be interviewed! If you live in the Boston area you too can participate! Please take the survey if you live in the Boston area!

      Lisa
      Knowledge is power ... Stay informed!
      YOU can make a difference - all you have to do is try!

      Dx age 12 current age 46 and counting!
      lost: 5 family members to HCM (SCD, Stroke, CHF)
      Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
      Therapy - ICD (implanted 97, 01, 04 and 11, medication
      Currently not obstructed
      Complications - unnecessary pacemaker and stroke (unrelated to each other)

      Comment


      • #4
        Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

        Lisa.

        Any hope of adding Lancaster? Nah. I guess not.

        Leon
        God Squad co-moderator
        Nothing is as gentle as strength and nothing is as strong as gentleness

        Comment


        • #5
          Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

          I responded to the survey, but since it is only for Chicago, LA and Boston, it just takes the basics, who, what, where and says thanks. I guess they're not interested in the rest of us.
          Diagnosed with 'murmur' 1991; confirmed HCM, 1998; Myectomy, Jan. 2007; Pacemaker, Feb. 2007; no previous symptoms before 1991. Vietnam (15 months), 1967-68; Military Training Instructor, 1969; played most sports and had no health issues.

          Comment


          • #6
            Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

            The company that is doing the survey has offices in the 3 cities listed, thus that is why they are interested in those from those areas only at this time. I am in talks with them to include our population in future studies and maybe even at the annual meeting.

            Thank you all for your interest - every persons input helps to make systems better!

            Lisa
            Knowledge is power ... Stay informed!
            YOU can make a difference - all you have to do is try!

            Dx age 12 current age 46 and counting!
            lost: 5 family members to HCM (SCD, Stroke, CHF)
            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
            Therapy - ICD (implanted 97, 01, 04 and 11, medication
            Currently not obstructed
            Complications - unnecessary pacemaker and stroke (unrelated to each other)

            Comment


            • #7
              Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

              When they say Boston area...what is their radius?

              Comment


              • #8
                Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                Chances are that their radius depends on how far you are willing to travel. I am in L.A. and I have to go to their office to take the survey. I have to drive 20 - 30 minutes from my house. They originally were going to come to my house, but then they told me that they were not going to be conducting in home interviews in L.A. and that if I wanted to participate, I would have to travel to their facility. If you are at all interested, you should fill out the HCMA survey, and then talk to them and see if you: 1) meet their requirements - for example you must have a cell phone; and 2) if you do, see where their facility is and if you can arrange a convenient time.
                Daughter of Father with HCM
                Diagnosed with HCM 1999.
                Full term pregnancy - Son born 11/01
                ICD implanted 2/03; generator replaced 2/2005 and 2/2012
                Myectomy 8/11/06 - Joe Dearani - Mayo Clinic.

                Comment


                • #9
                  Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                  Filled out the survey, so Ill see what they say when they call. I used the carelink a couple time but I HATE it. It took just as much time to send my reading than it did to drive into Mass General to get it read.

                  Comment


                  • #10
                    Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                    Bryan ,I am over an hour from Boston...they are coming to my house on the 22nd. They said they are doing in house interviews in Mass. The cell phone can be a throw away just for emergencies ..911 etc. At first there seemed to be some disqualifying factors for low income but then they took me in anyway, that seemed confusing ,but I guess it is not really a factor.

                    I also use care link but it works well for me.

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                      As Pam, they are coming to my home on the 22nd in the evening. When they called, they ask questions to see if you qualify.
                      Joe Del

                      Diagnosed @ age 45 with HCM June 2004; ICD Implant: September 2004. Fifteen years prior was tested and told had an anxiety attack. Second ICD implanted May 5, 2009 with adding second lead.

                      My biggest part is the depression and now on disability.

                      Tested positive for HCM gene and all three children are negative.

                      Husband and father of three children: Son 18 and two daughters 13 and 7.

                      Comment


                      • #12
                        Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                        Lisa,

                        I forwarded your email about the survey to my mom and they did the survey with her at home at 4:00 yesterday. Now she has extra cash to spend on her next trip to Vegas. Thanks.

                        Be well, Janet
                        Believe in the goodness of mankind.

                        Comment


                        • #13
                          Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                          Originally posted by Pam Alexson View Post
                          I also use care link but it works well for me.

                          Pam
                          Thats what some people say, but I wonder if mine has more of a hard time seeing my device is located in my abdomen

                          Comment


                          • #14
                            Re: Chicago and Los Angeles Area Study - home monitioring of ICD's and Bi_V devices

                            Bryan,

                            I did not realize you had it there. It does sound like it may not get a strong signal with your placement in abdomen. Did they call you to do the survey?

                            Pam
                            Dx @ 47 with HOCM & HF:11/00
                            Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                            Lead failure,replaced 12/06.
                            SF lead recall:07,extracted leads and new device 2012
                            [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                            Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                            Genetic mutation 4/09, mother(d), brother, son, gene+
                            Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                            Comment

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